A Human Rights-Based Perspective on US Health Equity: Overcoming a History of Racism and Distrust

This perspective was contributed by Melissa McNeilly, New Tactics Project Manager for Digital Content Creation. Melissa is a rare disease mom and co-founder of the KARES Foundation.


Of all the forms of inequality, injustice in health is the most shocking and the most inhuman because it often results in physical death. - Dr. Martin Luther King, Jr. 

Dr. King said these words when addressing the Medical Committee for Human Rights in 1966. 57 years later, health inequities continue to persist in the US. These disparities persist as a result of poverty, racism and gaps in education and housing — the social determinants of health. With the added challenges of a global pandemic, we’re a long way off from meeting the health-related targets of the 2030 Sustainable Development Goals.

Without access to health, we cannot access our basic human rights to life and human dignity. Many marginalized communities in the US, especially communities of color, continue to be under-resourced when it comes to medical care. Here at the Center for Victims of Torture, a nonprofit that provides direct medical and psychosocial support to survivors of torture, our staff are all too aware of the disparities in healthcare that disproportionately affect marginalized groups.

Health equity is a personal advocacy issue for me too. As the mom of a child with a rare disease, I am interested in the many and intersectional ways in which rare disease patients are particularly disadvantaged. My reflections are largely based on discussions held at the RARE Health Equity Summit in Atlanta, Georgia in November 2022. Global Genes, a rare disease patient advocacy nonprofit, presented this conference in partnership with the Rare Disease Diversity Coalition. (Read Part 1 of my reflection here:  A Human Rights-Based Perspective on Global Health Equity!) The meeting convened doctors, researchers and caregivers to examine disparities that exist in healthcare, particularly as they relate to rare disease patients. Some of these disparities include:

  • That people of color are often not taken seriously (or overtly discriminated against) when receiving healthcare. This is also known as “medical gaslighting” – a phenomenon that is even more common amongst rare disease patients.
  • In genetics and genomics, the research that has been done up to this point has not been representative of diverse communities. Historically, research programs rarely include diverse populations such as immigrants, refugees and people of color. 
  • Access to testing and diagnosis is often a privilege granted to those with financial means.
  • Minoritized groups frequently face linguistic, cultural and other barriers to access appropriate care.

Speakers at the RARE Health Equity Summit, November 2022, in Atlanta, GA, USA

So how did we get here? The answer lies in our history. In the US, a number of historical wrongs against communities of color have led to these inequities and widespread distrust of healthcare systems by marginalized groups. Some examples include:

  • A legacy of US eugenics practices: from the 1920s-1970s, there were 70,000 forced sterilizations, many of whom were disabled or minoritized people. As a society, we continue to demonize those who are different, as evidenced currently by the divisive rhetoric around immigration and asylum.
  • Henrietta Lacks: a black woman with cervical cancer whose cells were obtained (and continue to be used) for research without her knowledge or consent. She is the topic of the book and film The Immortal Life of Henrietta Lacks. Her family never received any compensation for use of her famous “HeLa” cells, nor has there been acknowledgement of Henrietta Lacks’ significant contribution to modern medicine.​​​​​​​
  • The Tuskeegee Study: a US Public Health Service study conducted from 1932 to 1972 to record the natural history of syphilis. The study enrolled 600 Black men without collecting their informed consent.  Even when treatment became widely available in the 1940s, participants in the study were not offered it because researchers wanted to study the untreated disease. There was eventually a settlement and a formal apology by President Clinton for a study that was “deeply, profoundly, morally wrong.”​​​​​​​
  • More recently, we saw the inherent distrust of the healthcare system by communities of color play out during the COVID-19 pandemic. Due to historical inequities and abuses, people of color were less likely to participate in clinical trials in the development of vaccines. Black Americans are getting sick and dying from COVID-19 at higher rates than white Americans — affected by distrust and systemic barriers: economics, location, the types of jobs worked, access to healthcare and unconscious bias.

These are just a few examples of a long history of mistreatment and abuse of BIPOC communities in the US. So, how does the medical community overcome these challenges? How can we overcome distrust and begin to rectify the wrongs of our past and the structural racism embedded in healthcare policy?

In the world of rare disease, there are amazing studies such as the Undiagnosed Diseases Program taking place at academic centers. However, studies like these are only available in a few select locations. They tend to only serve those who know about the program, are able to take time off work and are able to pay travel costs. Time and resources prohibit the participation of many historically marginalized communities. If participation is not realistic, then we must analyze how we are privileging access to healthcare and diagnosis.

To overcome this obstacle, some providers are using the tactic of going to the most vulnerable populations. An example is the use of decentralized (virtual) clinical trials, which gained popularity in the early days of the COVID-19 pandemic. In decentralized clinical trials, medical services are provided in the patient’s community – for example, at a local church or community center. In Los Angeles County, California, the Department of Public Health financed the creation of a training program for Promotores and Promotoras. This provides an infrastructure of trusted sources of information in the community. Some providers are also using the internet and technology to collect data and interact with patients. If a provider cannot deliver services in the patient’s community, they should provide appropriate transportation or technology to access services. Remote use tools, not requiring travel, and providing appropriate transportation and technology are all ways in which the healthcare community can seek to “level the playing field” and ensure access for marginalized communities.

Healthcare providers must be intentional about their interactions with patient communities. The medical establishment has a history of engaging with communities of color for their own benefit. Providers can deviate from this model by providing compassionate care and truly seeking to understand the lived experience of underserved communities. Interactions cannot be transactional. They must be long-term, sustained, and authentic. Patients should be viewed as equal partners in their care journey. Only then can trust be rebuilt.

Patient conversation training should teach provides to address not only diagnoses, but what patients and caregivers can do to improve quality of life now. The best doctors that treated my son’s ultra-rare disease weren’t afraid to say “I don’t know.” With more than 10,000 rare diseases, a compassionate approach goes farther than memorizing symptoms and characteristics. My son’s doctors didn't know what KDM5C was, but they did know how to practice humility, which has broad reach across all diseases. They were willing to put in the work alongside me to problem-solve issues like sleep and feeding. Clinicians and researchers also benefit from making these personal human connections. It is a powerful way to reinvigorate their passion for the work.

“Providers need to view themselves as allies to their patients in their pursuit of hope and healing.” -Leah Peer, Peer Med Foundation

Rebuilding trust also requires consistent bi-directional and meaningful community engagement. Current grantmaking policies can make long-term engagement difficult. A healthcare entity might only engage in a community for two or three years until the grant period ends. However, some advocates are advancing health equity through innovative tactics such as patient journey mapping. This novel approach to understanding patient healthcare encounters tells how patient journeys differ based on factors such as race or disability. Providers can assess barriers patients encounter (affordability, underinsurance, diet, etc.) on their healthcare journey and work to dismantle them.

In addition, providers must work to eradicate shame and stigma that exist around pursuing care. For the rare disease community, this is especially important when it comes to accessing life-changing genetic information. Parents commonly experience shame around being the “cause” of their child’s diagnosis. They may have a hesitance to take part in genetic testing themselves. We have to dispel these misconceptions and provide education to patient communities that builds empowerment rather than fear and shame. An example of this is Global Genes’ Know Your Family History initiative. This initiative encourages families to have hard conversations about their family’s health history now, so they can experience improved health outcomes in the future.

Lastly, it’s important that the healthcare industry increase the diversity of the workforce, especially in clinical genetics. We know that intentionality in representation is important. Experiencing increased diversity in the workforce helps mitigate our unconscious bias. This is why we see robust efforts, for example, to increase STEM opportunities for girls and women

One tactic to increase diversity in hiring includes pairing patients with students who are pursuing a career in medicine. Global Genes does this through the Rare Compassion program, which helps future physicians understand early the challenges of the rare patient experience. Students build compassion and empathy while learning about the challenges of living with a rare disease. Patients advocate for their rare disease and gain a better understanding of medical systems. Tactics like this provide a glimpse of hope into a more equitable future for healthcare. 

Ultimately, parent advocates like me want to prevent other families from experiencing the same diagnostic odyssey. There is power in acknowledging our stories and empowering others to share their own. However, we must recognize that real change will take sustained and intersectional efforts. In a community where there is already so much loss of hope, we cannot become discouraged. We all have the right to achieve our highest attainable standard of health. We have the right to receive timely, acceptable and affordable healthcare from our providers. We must know our rights as patients. We must demand that the medical community recognize the failures of its past. And we must move forward with hope to improve the enjoyment of all people to the right to health, starting with those who are the furthest behind.

This perspective was contributed by Melissa McNeilly, New Tactics Project Manager for Digital Content Creation. Melissa is a rare disease mom and co-founder of the KARES Foundation.